Once vibrant man with ALS speaks out about suffering, wish for New York to allow him life-ending medication: ‘A slow kill’

SMALLWOOD, N.Y. — About 115 miles northwest of Staten Island, in a picturesque hamlet within the town of Bethel, New York, Brian Moffett patiently waits.

First, for his morning shower.

Then, for his breakfast: A cinnamon raisin bagel, his favorite.

Moffett waits to be dressed for the day, waits for his medication to be administered, and waits for family and old friends to visit the property he bought a decade ago but has called home for the last two years.

Waiting has become unavoidable for the longtime Staten Islander now that amyotrophic lateral sclerosis (ALS) has him firmly in its grip.

Though symptoms of the incurable, progressive motor neuron disease began around the time of his retirement two years ago, the once proudly independent 66-year-old wasn’t officially diagnosed until roughly three months ago.

In the 12 weeks since, Moffett has lost nearly all mobility, save for some movement in his neck and face, and a bit of dexterity in one hand. He can’t walk, and is in constant pain. His speech is halting, slurred and punctuated by labored breath.

Moffett relies on extensive and expensive round-the-clock at-home care provided by his adult son, Jake; cousin Joe Arbeeny; and attentive health aides, all of whom bathe, clothe, move and feed him.

Moffett will be the first to tell you: He didn’t have to live the rest of his life this way.

He could have died on his own terms had New York’s Medical Aid in Dying (M.A.i.D) Act garnered enough support to pass the state Legislature this year, and Gov. Kathy Hochul signed it into law.

The act would have allowed mentally competent, terminally ill individuals over the age of 18 with fewer than six months to live the choice of self-administering prescribed life-ending medication.

Believing he qualified, Moffett wanted to be the first in the state to use it, and hoped to employ it on Aug. 1, his 67th birthday.

Instead, the measure — which was first introduced by former Staten Island state Sen. Diane Savino in 2015, and counts present Staten Island state Sen. Jessica Scarcella-Spanton as its current prime co-sponsor — failed to advance for the fifth-straight legislative session. No iteration of the bill has ever been brought to the state Senate or Assembly floors for a vote.

Lawmakers will have to wait until January 2025, the start of the new session, to reintroduce it. That’s an impossible timeline for New Yorkers who, like Moffett, don’t have time to spare.

Moffett didn’t want to live out what his fatal disease has in store for him.

Now, it seems, he’s left to wait for the inevitable.

Day to day

A hospital bed, where Moffett spends much of his time, sits in the center of his living room facing a giant wall-mounted TV. Nearby are a wheelchair, a battery-powered recliner and Moffett’s beloved 10-year-old dog, Shelly, who is never too far away. Sliding doors allow sunlight and fresh air to stream in. A dry-suction machine that helps clear sputum from his mouth rumbles loudly behind him.

“Bed. Chair. Bed,” Moffett, who recently welcomed the Advance/SILive.com into his home, said of his daily routine.

“I can’t move. I can’t put my hand up to my face to scratch. Everything is hard. Every day, life is real hard.”

Quality of life, according to Moffett, is “sadder than the day before.”

“I can’t do anything on my own. Nothing. Everything I do, I need help. I still have my eyesight, but my muscles are all weakened.”

Between strings of words, Moffett pauses, then wheezes. The muscles in his chest and abdomen, so affected by the disease, no longer contract the way they should. It makes it impossible to cough out the phlegm clogging his airway.

“ALS is killing me. It’s a slow kill, and I don’t want to suffer. Every day I’m here, I’m suffering. It’s very depressing.”

His message to lawmakers: ‘This law, I want passed’

Currently, just 10 states — Oregon, Washington, Vermont, California, Colorado, Hawaii, New Jersey, Maine, New Mexico and Montana — and Washington, D.C., permit medical aid in dying in the U.S.

Delaware’s state Legislature narrowly passed the End-of-Life Options Law on June 25; the bill still awaits Gov. John Carney signature.

Despite being previously deemed too medically compromised to relocate, Moffett is still considering an attempt to leave his home state of New York — regardless of the great strain it would surely put on him — to use a nearby state’s medical aid in dying law.

But his time could be running out. According to the ALS Association, the average survival time for an individual diagnosed with the disease is three years. While it’s possible Moffett could exceed that — it’s estimated about 20% of people with ALS will live for five years; 10% for 10 years; and 5% for 20 years or longer — it’s unclear when he’ll lose his ability to speak, and what little function he has remaining in his hand. His mind remains sharp, but his body’s deterioration is rapid.

Requirements to use medical aid in dying are rigorous across the board. Among the many prerequisites for qualification: The capacities for a terminally ill person to be able to verbally request the life-ending medication, and their ability to self-administer it.

That realization is anxiety inducing for Moffett, who has become one of many outspoken advocates, like Daren and Amy Eilert, to call for the M.A.i.D. Act to pass in New York. The Eilerts’ 24-year-old daughter, Ayla, a Manhattan resident, died in excruciating pain from a relentless cancer less than seven months after her diagnosis. Ayla repeatedly begged for relief by way of medical aid in dying, according to her parents.

Moffett understands he likely won’t get to see New York pass its own medical aid in dying law. That won’t keep him from trying.

“Let’s change this for the people like me,” said Moffett.

“I’m not talking about someone that just wants to die. I’m talking about the people that are real sick, and don’t want to go through it.

“Every day, I’ll be suffering. From today, tomorrow, until I die. ... this law, I want passed.”

Pieces of Staten Island

Amid the calendars and white boards with medication schedules and medical visit reminders, memories of Staten Island adorn the walls and spaces between.

A framed menu from the Westerleigh Folk Festival hangs in the kitchen of the retired 25-year MTA employee’s one-story compound, as he calls it; Moffett, also known as the “Grill Master,” was a founder of the event.

A street sign that reads Roberta “Bobbie” Jacobowitz Way, commemorating the late North Shore activist (his former mother-in-law), sits high near his entryway. The original hangs at the intersection of St. Marks Place and Hyatt Street in St. George.

In a mirrored glass cabinet, between New York Jets and Mets memorabilia, are Moffett’s various tchotchkes that reflect the 60-plus years he spent in the borough between West Brighton and Westerleigh, and his favorite photo of him and Jake, taken decades ago.

A giant working payphone booth looms in one corner of the living room. Moffett brought it upstate from its former home, New Springville’s Island Swim Club, before the club’s demolition in the early 2010s.

Outside, old manhole covers from New York City streets act as stepping stones to Moffett’s workshop, where a vintage clock from Clove Road sits. His five grills, which brought so much joy to so many, are split up between open-air storage and a tent on the property.

Every item is a reminder of what he enjoys.

It all sits idle now.

His ‘right to die’

ALS has stolen Moffett’s ability to roam and live freely, but it won’t take away his memories: The time spent playing football and baseball next to his childhood home on Taylor Street in West Brighton; making dear friends at PS 19, I.S. 27 and Ralph R. McKee High School; the fun he’d have at Staten Island’s beaches and parks, High Rock Park in particular; or the moments shared with buddies as an adult at the bars on Forest Avenue.

It won’t take away the unbreakable bonds he formed in his home borough and beyond, nor his reputation as a helper, one who frequently dropped everything to donate his time and efforts to a friend or fellow Staten Islander in need.

ALS also won’t steal the way Moffett’s blue eyes light up when he talks about his son, Jake.

“I raised a good son,” said Moffett. “If it wasn’t for Jake, I probably wouldn’t have been able to do [anything]. ... I was blessed with good family.”

Demanding to die on his own terms weighs heavily on Moffett, especially when he remembers everything and everyone he holds dear. Still, he knows it’s what he wants to do.

Or, at least, what he wishes he could do.

“Let me go in peace. It’s improper, not letting people like me have their right to die,” said Moffett.

He urged New York lawmakers one more time:

“Pass it.”

Update: Longtime Staten Islander Brian Moffett, medical aid in dying proponent with ALS, dies at 66

Jake Moffett has set up a GoFundMe campaign to help pay for his father’s memorial costs and remaining medical care expenses. To donate, visit GoFundMe.com and search the keywords: Support for Dad’s ALS Home Care.